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Why LeftyByDefault.com?

When I became a kid-gimp in 1990 (see About page for more details), I was paralyzed from the neck down. Then, once I began regaining mobility, my left hand had far more functioning than my right, my previously dominant hand. I learned to write with my left hand, by default, and I now have a new dominant side. Ironically, I write better with my left hand than I did with my right! However, I drive my power wheelchair and do lots more with my right hand, so it has ample purpose!

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Well, I’ve gotten through Week 1 of teaching!  I did a video blog this time to recap.  It’s fun and was quicker than writing!

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Fever's charm

Last Wednesday evening I wasn’t feeling great, thought I was just tired from working hard for several days.  As I got ready to go to bed though, I noticed that the tiny aches I had all day were now accompanied by the feeling of a fever.  I checked, and sure enough, it was 99.7 degrees.  I’m usually below the normal 98.6, so this was confirmation that something was awry.  I had no other symptoms though.  Only the oncoming chills and other joys of fever.  My mother, in her infinite wisdom, suggested it was probably a urinary tract infection.  My own brain was burning up and could not process such a simple cause of fever.  I grabbed some Tylenol and was on my way to shivering under my hugging covers.  It was the first of a few nights plagued by fever dreams.

The next morning was no better, temp up to 101.  But, no doctor’s appointments available until Friday at 10:45.  A little backstory on the doctors.  When we moved here in 1995, we used a family practice nearby and saw Dr. C.  In 2002, that practice stopped taking the insurance we used.  We found another family doctor, Dr. R, not far from Dr. C’s practice. Things went relatively well until Dr. R retired and moved away in January.  Sometime before that, Dr. C joined Dr. R’s practice, so we planned to see Dr. C again after Dr. R retired.  Bing, bang, boom.  Another doc, Dr. E. R. did join the practice when Dr. R retired, so there are two docs still in the practice.  Got it?  Good.  Well, Dr. C had no appointments for Friday, and Dr. E.R. was out of town, BUT she had a fill-in doc for her, so I would see her.  Not a real problem, since I had not met Dr. E. R. either because I had only planned to go to Dr. C, but new doctors are really annoying for veteran crips, gimps, and/or generally unwell folks.  At least they are for me, and I’ll bet I’m not alone.

So, why are new docs so annoying for us veteran gimps?  Well, let me use Friday’s appointment as an shining example.  First the computers were down.  Where are we anymore without computers?  Apparently far from knowledgeable about how to interact with patients.  More about that in a moment.  I gave my urine sample to the nurse and she got my info.  My 102.5 fever from 7:15am was down to 97.9 by the time of my appointment.  Got to love the Tylenol.  No major symptoms otherwise, at least none that I was able to sense given that most of my sensation stops just below my chest.  If there is pain, it’s got to be big time.

Fill-in doc comes in.  She’s shorter, tiny, maybe 40s, Middle Eastern.  She scans the room to decide whether my mom or I am am the patient.  I say I’m Laura and she proceeds to squint her eyes at the paper where my last name is scribbled so that she cannot read it.  She asks my mom to read it and we realize her confusion and tell her our last name.  Whew, good to go.  She introduced herself, I think, but I still can’t remember her name.  We’ll call her Nervous Nellie.  With the computers still down, she knows nothing about me, but mainly asks about my symptoms – if I have any pain, headaches, etc.  I explain that I would not likely feel any pain in my back, etc., but that I have not had any headaches. She notices  that my fever has gone down.  Yes, I took the miracle drug, Tylenol.  Ah, she acknowledges.  She finally states that the sample does show bacteria, an infection.  Nervous Nellie is tentative.  She wonders why I have an infection.  How do I catheterize?  I inform her that I do intermittent catheterizations, that about 12 years ago I had surgery that enlarged and rerouted my bladder and that I cath through a small opening, or stoma, just below my navel.  Nellie says, “Oh, so you don’t wear a bag or anything?”  Nope, sure don’t.  Then she asks if I use sterile catheters.  Yep, sure do.  I’ve been catheterizing for almost 20 years, I keep things very clean, but almost 20 years of cathing will invite a few critters now and again.  It’s par for the crip course, and common knowledge among the medical crowd I might add.  Now, my super duper bladder surgery is not that common in the medical crowd, but it has made my life so much better and has cut way down on infections.  I can catheterize independently while in my chair and you can imagine the freedom that affords.

Nellie then suggests that maybe I should cath more frequently.  Eh, maybe.  I’m so vigilant about my care, people.  Really.  I’m one of those people who actually drinks the requisite number of glasses of water EVERY SINGLE DAY.  It’s sickening to be around me sometimes.  Well, I keep myself company pretty well, but ya know.  So, I kindly agree that maybe an extra cath would help.  She wants to palpate around my bladder.  Sure, why not?  She touches me more gently than any doc has probably ever done, just barely palpates, all confused by a scar here or there and I explain.  She never actually felt anything more than the surface skin.  I know palpating and this was not it.  She was so scared.  Poor thing.  I really was nice, I promise.  After twenty years of folks poking and prodding me, I almost have a welcome sign printed on my forehead: “Come on down, you’re the next contestant on ‘Check out Laura’s Bod!’”  Truly, very little is sacred, you get used to it.

Then we talk about the antibiotic.  There are three antibiotics I’d prefer not to take because my stomach hates them and then I hate life.  I tell her and we agree on a different one.  Then I update my medications.  Now, I am only on five medications regularly and one of them is temporary.  But I hate listing them to some docs.  They judge, I know they do.  I love my regular docs.  They know me and they know why I do what I do and when and how and any other combination.  They know I am intelligent, capable, responsible, and truly do what’s best for me as much as possible.  They know disability and they know me.  They know that disability and I make a good match.  Disability and I are friends; we have an intimate bond and we work together and against each other, depending on the year, month, week, day, and sometimes minute.  It’s life.  People, even docs, who really know me know this.  Strangers have no conception of how this could work.

Finally, we recap.  Plenty of fluids, more frequent caths, Tylenol for a day or two more only, call if it doesn’t get better.  Cool.  She’s written the prescription and we are ready to get going.  Then, BAM.  She says, “What’s your history?  Was it an accident?”  Seriously, people.  I think I should write a grant application for a public service announcement on how to ask crips why we’re crips.  If even doctors can’t figure it out, we have some work to do.  I tell her, “no, it was transverse myelitis.”  She says, “Oh,” or something like that.  She appeared to know what transverse myelitis (TM) is, and I did not explain.  I used to have to explain to medical professionals.  Now more of them know TM.  But here’s the deal, good people.  I know I present as someone who has a spinal cord injury (SCI).  TM and SCIs are similar in their outcomes.  But of all people medical professionals should not assume I have an SCI.  They know there are any number of reasons people can be wheelchair users.  But that handy dandy computer wasn’t working.  I was all charmed out by this point.  Had she asked for my history at the beginning of the exam, I would have been in a better frame of mind about the whole thing, but I was ready to go home and feel better (or cath a few more times), not satisfy her curiosity.

I am indeed feeling better now and have had a fun story to tell.  But I get tired of explaining sometimes, especially when I’m sick.  Meet me halfway.  Assume I have knowledge about my body.  I have a degree in human services and one in sociology and then I’ve got a Ph.D. in being Laura Overstreet.  Meet me there and we will get along.  Even if you don’t know any of that, assume that I’m competent about myself until I prove otherwise.  I promise your patients will love you more.

Two important points.  First, I was interviewed for New Mobility magazine’s cover story on the 20th anniversary of the Americans with Disabilities Act (ADA).  Check it out here!  Second, I’m taking a short blog hiatus to prepare for the class I’m teaching starting next month.  Talk to ya soon!

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Social media, reality TV, and our values

Social media. It is a way of life for most of us these days. Who would have ever conceived of common usage of the word “tweet?” Now we use it as a verb and we’re not even chirping like little birds! Social media is a big stinking deal. Even my mom’s on Facebook, people. This is a woman who can barely cut and paste or attach a file to an email. This is the time when we as the everyday citizens of the world have an unparalleled opportunity to engage with the media and reframe, problematize, criticize, and newly shape what is most important in our social consciousness, what we value. It’s so awesome it’s overwhelming.

There is danger lurking in everything though. The first danger is banality. If you’re a member of any social networking site, you have felt and noticed many things that include the awesomeness and overwhelming nature of it, but you have also seen how incredibly self-centered it can be. I admit I have likely put up boring or self-centered status updates, but I try to keep them to a minimum, which may be why people actually respond when I update my goings-on. That’s the second danger, the self-involved monster that social media can create. We can start to feel that we are far more important than anyone ever should feel. We have our own page, our own views to disseminate loudly and vehemently, all the rest be damned. Do something good with your social media access.

And reality television. Recall what you watched in a first airing or re-run of “Father Knows Best” or “The Patty Duke Show.” Not terribly realistic. I have a rather perceptive golden retriever, but she’s no Lassie. But—I am a relic of the first reality TV experiment: “The Real World.” I gleaned some of my most important life lessons from this groundbreaking MTV old-timer by today’s standards. Let’s see, there were heated conversations about race relations between Season 1′s Kevin and Julie; learning about safe sex, abortion, and how far is too far from Season 2′s Tami; AIDS and the art of public speaking from Season 3′s late Pedro Zamora; not to mention all of the gay relationships I first saw on TV from “The Real World.” Those were the 1990s when I was in my early to mid teens, ripe for learning about a world outside of my own small corner of it. “The Real World” has become less real and more disturbing over the years, but it certainly gave my generation a lot of food for thought in its nascent state.

Reality television these days is everywhere. As a self-proclaimed TV lover, it is sometimes impossible to resist its lure, but I find it increasingly simple. I give in to “American Idol” and then call it a year when it comes to reality programming. Why is this so simple for me and probably for countless others? Because this reality TV does not represent my reality, our reality. It’s pretty far from my norm in fact.

And now, we learn about Abby Sunderland, the 16-year-old California girl who attempted to set a world record for solo sailing around the world and was rescued from her yacht in the Indian Ocean this past Saturday. Before she even set sail Magnetic Entertainment approached her family about doing a reality television program about the family and Abby and her brother Zac’s sailing trips. It was never picked up. Seriously, who wants to see another reality show about a big family and their so-called adventures? My friend Alida Brill, author, social critic, long-standing advocate for women, girls, and people with chronic illnesses, and the inspiration for this post, has “seen heroic young girls all over the country, girls who do not get to choose to sail around the world, girls with chronic illnesses, and girls who work for social change. What about those girls? When do we hear about them?” Indeed.

I want to see a reality show (or shows!) about real people and real issues. Like 12-year-old Zach Bonner, founder of the Little Red Wagon Foundation. This little guy is doing big things for youth in distress: homeless youth, kids in domestic violence, natural disasters, and more. His website says a movie is being filmed about Little Red Wagon in Charleston, South Carolina. Perfect example of something I actually want to see!

I want to see a reality show about 3E Love. This is a group of awesome young folks in the Chicago area who, from the idea of the Stevie Hopkins’ late sister Annie, have taken the antiquated “handicapped” symbol we see and made the wheel of the wheelchair into a heart and created an awesome company out of promoting disability awareness through their simple but powerful message: “Embrace Diversity. Educate Your Community. Empower Each Other. Love Life.” I want to watch Stevie and his 3E Love team members travel the country talking to people about disability awareness and selling their kickin’ wheelchair heart logo wares.

And I really want to see Zach Anner’s show that he is vying for in Oprah Winfrey’s contest. Have you read about this dude? He rocks! He has cerebral palsy, what he calls “the sexiest of all the palsies,” and is “in it to win it” as my dog Randy Jackson on “American Idol” would say. John Mayer got the word out, along with a whole host of other folks on the web, and has offered to do the theme song for Anner’s proposed show on adventures for people who never thought they could travel, to go to some of the most inaccessible places in the world. He’s flippin’ hilarious too and totally debunks tons of myths about disabled folks! Case in point: he figures he can get a girlfriend just by virtue of now being associated with John Mayer! He just might win, people! VOTE, VOTE, VOTE for him.

I can’t wait to buy Crystal Bowersox’s, runner-up of this year’s “American Idol,” album. This woman is super talented and had me singing every week! She has Type I diabetes and wants to use her fame to advocate for the Juvenile Diabetes Research Fund.

These are the people I want to “like” on Facebook and “follow” on Twitter. These are the folks who get my juices flowing and my blood pumping. These are young people doing big, heroic things. These are the individuals who should be the celebrities of today, of the new age of socially engaged media.

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Full circle

Last week I got some big news – I’ll be teaching at Kennesaw State University in the fall!  I will be a part-time instructor in the Human Services program and will teach the Human Socialization class.  I am beyond excited!!  This was my favorite class in the curriculum when I was a student and the class that made me want to continue my education, to learn more and learn deeply.  I was thoroughly engaged with the textbook, class discussions, and assignments.  Come to think of it, this was the class in which I read Rachel Simon’s Riding the Bus With My Sister.  We were assigned to read a book that related to human socialization and write a paper on it, and I chose Riding the Bus.  A supremely awesome semester and beginning of an amazing senior year.

So, what is human socialization?  Well, it’s a multidimensional approach to human behavior in the social environment.  It combines lots of psychology and sociology to prepare students for working with clients in their internships and future careers.  It gives them the general knowledge of theory and research to apply to the unique individuals and situations they will encounter in the field.  Intriguing, fun stuff.  And it means I have lots of preparation to do!  More fun stuff.

I have been a guest lecturer/speaker for years now on different topics of disability awareness, mainly speaking in this same department building skills and a knowledge base from which to teach.  I cannot stress enough the positive outcomes from building relationships and networking.  It’s been a win-win situation for me.

I will undoubtedly flash back to the silly or immature things I did or said or thought as a student in this same department and university not all that long ago.  I will try to laugh at these recollections instead of wincing at my young, naive self in an attempt to counter my usual and annoyingly self-critical personality.  Then I will probably have to pinch myself every so often to make sure this is actually happening, that I am fulfilling yet another dream come true!

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Podcast fun

The text of this blog is short to tell you about the podcast I just did with Many Worlds Network creator Alexander Kaminsky.  We chatted about my perspectives and experiences with disability.  Good fun for a Sunday.  Check it out here!  It plays for about 28 minutes.

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Interview with bestselling author Rachel Simon

The House on Teacher's Lane book cover, courtesy of Rachel Simon

Rachel Simon, bestselling author of Riding The Bus with My Sister, is releasing the paperback edition of her latest book, The House on Teacher’s Lane, on Tuesday, May 25th. I read Riding The Bus with My Sister, a memoir about Simon and her sister Beth who has developmental disabilities, when it came out in 2002 after I caught an excerpt of it in Rosie O’Donnell’s former magazine. I was an instant fan. A few weeks ago, as our own home underwent a kitchen renovation, I read Building a Home with My Husband, now titled The House on Teacher’s Lane, Simon’s latest memoir about the renovation of her and her husband’s home and the many relationships in her life.

Simon and her husband had just married after a 19-year on and off courtship. They were living in an older row house in Wilmington, Delaware, and it was time renovate. Hal, Simon’s husband, is an architect, and took on the job of designing and working on some of the house while Rachel helped within and outside of her comfort zone of household renovations and soon found the process precipitated personal renovations as well.

As I got deeper into the story, I went back to Simon’s website and found she had recently started a blog. Her blog is an author’s blog, beautifully filled with stories and pictures of her life that draw in the reader; they are mini Rachel Simon memoirs. I felt like I knew her even more, her commitment to disability issues thriving, and decided to e-mail her and gush about her work. She replied and we found a wonderful connection.

Rachel joined me for an interview about The House on Teacher’s Lane and our discussion follows.

Laura: A major theme of the book is that “stuff happens.” I often say that life happens, whether we want it to or not, and for me it may relate to aspects of disability or any number of things that happen in our lives from the mundane to the extraordinary. What does “stuff happens” mean in the context of The House on Teacher’s Lane?

Rachel: Great question! There is the past that is the setup for it and the present as I am living in it; the book is a weaving together of the past and the present. The house contains the past, as well as the present. Some of the key things from the past that I contemplate in the present are my relationship with my spouse – the 13-year relationship, then the 6-year break up, and then we got married; the stuff as a kid that casts a shadow on the breakup, and my mother where she kind of “loses it” when I was a teenager and disappeared – these are the personal “stuff happens.” Plus, all those relationships I talk about with siblings and friends.

In the present and the construction of the house, there was a very, very big calamitous “stuff happens.” I won’t give that away. Up until then I was very fearful of things that can happen during renovation and knew them from Hal and other people’s stories. So, “stuff happens” and I think when you are dealing with both the heart and the home, you kind of have to expect it, and you have to deal with it, give to the people working in your home and receive what they give you, monitor your own reactions, and be open to it.

I do see the book, and even though it is not a disability book, I do see it as a disability philosophy. Part of this is that “stuff happens” and what do you do? Say, “oh, my life is over” or “okay, we’re going to get on with it.” When you grow up with disability in some way you realize that the people who don’t live with disability often perceive the world as being two worlds – those with and those without disability. But those who live with disability know there really is only one world, but then there are two worlds, too. That is, when you live with disability, you have much more of a “okay, we’re going to get on with it” attitude. You don’t think, “Good things happen to good people, bad things to bad people.” To me, that whole way of looking at the world – that good and bad happen no matter who you are, and you just need to get on with it – is at the heart of this book.

Laura: That’s always bothered me. I remember realizing, maybe in my early twenties, that’s not true. Bad things happen to good people all the time, but then we have to define “bad” anyway.

Rachel: Exactly. You may do the right things and get a different reward. A disability philosophy wastes no time on worrying about all of that.

Laura: A similar point came up in the “First Mornings/Self” chapter, when you use the Plan D example from Dan Wilkins’ perspective of acquired disability: “It isn’t life on auto-pilot anymore. If you want to figure out how to do something, you give it a shot, and if Plan A doesn’t work, you go to Plan B, and then you go to plan C, and then Plan D.” You have already answered this some, but what are your thoughts on this disability perspective in the everyday lives of all people?

Rachel: I mention Bill Stillman in the book too. He has autism and speaks about entering the passion of people with autism. I realized when I was riding the buses with Beth that I entered her passion and that I hadn’t done that with my mother. The book is filled with the disability perspective, every chapter seems to have something. A big one is that happiness doesn’t require perfection.

Laura: I find Hal’s Buddhist approach to life intriguing and am a bit jealous of his even keel.  How did that influence all of the overlapping renovation processes?

Rachel: Part of it was that it made me calmer, helped me keep things in perspective so I wouldn’t blow things out of proportion, because he stayed calm. He said, “Let’s say we don’t end up doing the renovation. We still live in a place that would be a palace to most people in the world.”

On the other hand, if you want to get annoyed, if you want validation for those feelings, it gets harder. He was accepting of my frustration, but I also realized the uselessness of it. It helped in handling the disaster.

Back to the disability perspective for a moment, though. Many people have a transition process when disability enters their lives, whether they’re individuals or parents. And for some people that transition process changes them in ways that are not beneficial to living their lives. One of the great things about the movement is how it helps people transition positively. One of the things I encounter in speaking about disability are parents of children who are my sister’s age, when institutionalization was more common. It really went against the grain for Beth to be out in the public, but we just thought that was the right way to be, and of course it was, and is. But some of these parents feel shame and guilt for how they handled their child. Some were encouraged to feel shame and guilt by society, too – like, the whole idea of a person with a disability needing to be kept hidden. There are lots of complex feelings around this, even among parents of teenagers with disabilities now. I’ve had many talk to me about the grief they go through with every milestone their child does not reach. My parents didn’t have any of this. They just got through it. And their example helped me work through things in my own life. You can be disappointed, but you don’t have to grieve over and over. And goodness knows, shame has no place in any of this.

Laura: Much of your writing is reflective on your childhood and relationships with family and friends. What are some of the most important things you learned through these experiences?

Rachel: Oh, wow, there are so many! The big one for this book is that stuff happens but repair can happen. If you think that way, you recognize that loss and sorrow doesn’t have to be permanent. You can work with yourself or perhaps the other person. The corollary is that if you are in a relationship that may seem irrevocably broken, one of the best things to do is to keep your heart open. What I sometimes find is that if I think someone did me wrong, it was not even about me. I learn they had their own issues, and that’s what they were wrestling with; I was just caught in their own psychic crossfire. So I try to keep my heart open, and maintain the default sense of compassion. I really try not to impugn motive. It’s universal almost, if you tell someone about an injury that another person did to you, the person you’re speaking to will almost always impugn the motive. They’ll say, “Well, he did that because he…” and the “because” will be something really despicable about that person. But how do they really know? Impugning motive is a way of minimizing the other person, and shutting them off. Allow yourself to be open to an explanation. It’s a helpful way to live.

During the disaster we discovered a few errors and I wanted to be angry. Hal has a co-worker who says, and I put this in the book, ‘Never ascribe to malevolence what you can just as easily chalk up to incompetence.’ I think of this all the time, especially with all the political conflict we have in America right now. People on the radio and TV just make a constant assumption of malevolence instead of incompetence. It’s so destructive to operate that way.

Laura: Finally, one of my favorite parts of the book is when you come to a major setback in the renovation, the disaster. You recall a discussion with a friend about why so much had gone wrong in your life, and your friend talked about Emanuel Swedenborg’s work, that maybe there was no reason, or more specifically, that nothing happens in our lives out of which something good cannot occur. Can you tell me more about how this shapes your life?

Rachel: For one thing, when my friend told that me, it was in the context of breaking up with Hal, but also all my life I used to get furious, I would get so frustrated when people would tell me that everything happens for a reason.

Laura: Oh, I hate that! Sometimes things just happen.

Rachel: Right! And when I was younger I would ask them, and I used the language of the time, “well, then why is my sister mentally disabled?,” and people would give all kinds of reasons, saying it makes me a better person. It always got me angry and furthered my sense of distance from people who don’t know anything about the disability world. The way my friend explained Swedenborg’s viewpoint was vaguely close to other people’s “everything happens for a reason,” but different. It gives free will. Swedenborg’s phrase first helped with Hal, but then it helped with disability aspects of my life, and then it helped with a work experience where I could bring good into people’s lives, and it helps you live a life that is as close to good as it can be. I also found the secret to happiness in this book – infinite flexibility with the path and the goal.

What a great way to end our discussion! Don’t wait to pick up or order Rachel Simon’s The House on Teacher’s Lane. Check out Rachel’s website, www.rachelsimon.com. Her blog is there too, as are many, many tips on writing. If you go to Facebook, you can find a personal page for her as well as book pages for Riding the Bus With My Sister and The House on Teacher’s Lane—and on those book pages, she has tons of pictures of the renovation and the set of the Hallmark Hall of Fame movie for Riding the Bus With My Sister. Rachel has also just started using Twitter, so you can follow her there, too!

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Book Review - Dancing at the River's Edge

I am honored to have my first guest post at FWD!

Cross-posted at FWD/Forward: FWD (feminists with disabilities) for a way forward

Book Review – Dancing at the River’s Edge: A Patient and her Doctor Negotiate Life with Chronic Illness by Alida Brill and Michael D. Lockshin, M.D.

Alida Brill first landed on the “other planet” of chronic illness at age 12. In those years of the early 1960s, when her symptoms were not easily diagnosed and second-wave feminism was barely on the proverbial map, Alida became a feminist. Doctors ignored her and her mother because Brill’s symptoms were inconsistent and sporadic – and because she was a young girl. She has spent her professional career working for the rights of women and girls undoubtedly informed by those experiences in her young life.

Dancing at the River’s Edge is a dual memoir written by Brill, a woman with chronic illness, and Dr. Michael Lockshin, her physician. It is a rare, honest, and intimate account of their journeys. The chapters alternate between Alida and Dr. Lockshin as they tell us their stories of living with and working in chronic illness. Neither of them chose these respective lives – Alida never wanting to be chronically ill and Dr. Lockshin not intending to work in chronic illness – but their lives happened that way nonetheless. We as readers and fellow inhabitants of the “other planet” might admit something similar.

In reading about their journeys, we learn of their doctor/patient relationship which led to this book and we get a rare glimpse of the physician’s world and his delicate balance of treating patients. So often doctor visits are rushed and the relationship is one that primarily consists of the illness and/or disability. Sometimes we just want to get our questions answered and go home. More than any of this, though, we want to be seen and treated as whole people trying to do our best on the “other planet.” We want our doctors to know who we are in addition to our illnesses and/or disabilities. Dr. Lockshin does this with Ms. Brill, and we as readers reap the rewards of their partnership.

Brill voices the fears all too common for those with chronic illnesses and disabilities. Through the lens of the “other planet,”she gives us an honest portrayal of her illness, work, relationships, friendships, childhood and adulthood, the unique transition that occurs as we age, and the denial and subsequent recognition of illness. She brilliantly conveys the literal and figurative pain of a life filled with illness, yet in the end, she and the reader seem to recognize her life as one that, in her words, “really hasn’t been all bad.” Alida finds a way to thrive among the battle. Read this book not just because you can relate, you are chronically ill or disabled, or you are a supporter of those of us who are chronically ill and disabled. Read it for those reasons first – but pour yourself into it because it is beautifully written and a genuinely human story.

The paperback edition of Dancing at the River’s Edge is now on sale. It is also available in e-book.

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The relentless fight

Blogging Against Disablism Day, May 1st 2010

Monday I put on my well-worn disability awareness speaker hat and spoke to a college class about ableism, able-bodied privilege. (Well, it’s not really a hat but more of a speaker voice I tune. It’s only slightly different than my usual voice. I can’t command it, it just happens.) It was a human services class on cultural competence, and I have known the professor for years. We started at the beginning, with definitions of the medical and social models, of disability, and of able-bodied. We talked about privilege in general terms, and we talked about compulsory able-bodiedness and the daily effects of able-bodied privilege.

Much of this content is old hat to many in the disability community, and sometimes we tire of explaining these concepts to the world. But – at the end of the class, as the students were winding down their questions, the professor asked the students, and then me, what we can do to fight ableism. I answered that they are starting in the perfect place – talk about it, listen to the perspectives of the disability community. I said they should get online too and read about disability, that there is a huge presence online. It is important that they make friends with people with disabilities. College is a time when we open our minds and meet all kinds of people, and that sets the stage for a future filled with diversity.

As the days have passed, I’ve thought of more ways to combat ableism.

Confront, hard as it may be, people who use inappropriate language regarding disability. We may not all agree on what language is best, but I think we generally know when language is being used in a derogatory manner. People need to know it is not okay.

Be outwardly proud and unapologetic about our disabilities. If we cannot do something, or need to do it differently than our counterparts, it is okay to say so and work out what is best for as many people involved as possible. Being outwardly proud of who we are because of our disabilities is imperative. Don’t shy away from speaking about our lives as disabled people.

Have a sense of humor. There are myriad ways to approach this, and humor can certainly go too far, which is often individually determined, but a good laugh will set yourself and other folks at ease. I tend to have a dark and dry humor that others sometimes fear appreciating, but I try to let people know I’m having fun.

Keep learning. Keep exploring. I continue to foul up, but I keep trying. I’m relentless, er, resilient that way. We must critique ourselves and learn from the good stuff and the bad stuff. I have to remind myself that it’s okay to foul up, that it’s about the process and not necessarily the end game. Rome wasn’t built in a day and all that. It’s a cliché for a reason. This goes both ways though. We must allow our nondisabled counterparts to keep learning, exploring, and fouling up every now and then too. Then we help them learn from the fouls, provided they are willing participants.

What about you? What ideas do you have?

Check out all of the Blogging Against Disablism Day posts here!

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Yester-me, yester-there, yesterday

Yesterday I had my last speaking gig of the semester. I did my able-bodied privilege/ableism presentation that I developed last year. It went well, and while the students had few questions, those who did ask were insightful. They asked about employment opportunities for disabled people, disability accommodations on campus, if I would like to have children, and if I went to sporting events. I’m sure I’ve left out a few. I told them about the listening tours that the Department of Labor did recently throughout the U.S. to gain perspectives of disabled people regarding employment, and we discussed federal hiring of disabled people and universities looking to expand their diversity. I told them that while I had received excellent disability accommodations when I was a student, I needed very little and knew students who needed more but actually got less because of some professors’ negative and unaware attitudes. I was frank about my views on children – that I would not go it alone but am open to a relationship with someone who has or wants kids. Finally, I told them I am a horrible sports spectator. When I was younger and not a wheelchair user, I was always active, but rules of a game or teams never meant anything to me. I just wanted to move. Therefore, watching sports is rather boring for me. I’d rather be doing something else. I think they got it and some seemed to agree. One student asked if I find that I accommodate other people’s needs more than they accommodate mine regarding disability. I answered that I am a generally accommodating person with or without disability, which is wholly true. However, I do so less and less, and I think that comes with time. Life is about balance. Make the balance work as well as it can for everyone involved.

When I go to that campus, my undergraduate alma mater, I am often reflective of my years as a student and my years since then. A myriad of feelings and thoughts come over me ranging from melancholy to silly to accomplished. Next month it will be seven years since I graduated. Those years were some of the best of my life, and I cherish those memories more than any possession. Age gives way to maturity – if you’re lucky – but cynicism isn’t far behind. Many of my memories include silly, immature things I did or said, and I continue to marvel at the maturity gained over such a short period of time. The cynicism comes from the bubbles that end up burst as we age, but that’s another story all together. I visited with a couple of professors I had not seen in years, went into a growing department, approached complex ideas from an increasingly knowledgeable perspective, and I realized my rose-colored glasses view was clearer in a manner which did not diminish my past but informed my future. So much and so little has changed. I like who I have become though. From that young, young 19-year-old who was as undeclared of a major as you could be, to the young woman who made up her mind after much deliberate thought and research, to the highly idealistic 23-year-old who graduated with expectations out the wazoo, to all kinds of mess afterward and until most recently. I went through some hell to get here, but I got here. My talks have benefited from my hell and the knowledge and perspective gleaned from where I am now. Nothing like a little trip down memory lane.

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Home sweet home

I have spent most of this week hoteling it. We had vinyl floor taken up in the kitchen and hardwood floor put down, and that floor along with the other existing hardwoods, were sanded, stained, and protected with polyurethane. Dusty, smelly, and obstacle-creating. The hotel existence was odd though. The first time I’ve stayed in a hotel near my home. Not like a vacation much at all, except that I had limited Internet access and no easily accessible space to put my laptop so that I could work on anything. Mostly I ran errands. Not terribly fun, but extremely productive. It was, in all actuality, the most physically busy week I have had in years. Yes, years. I’m pooped.

First, I solved a long-standing driving issue. I’ve spent an inordinate amount of time trying to solve this problem only to finally solve it with relative ease. Only took my technician god scouring the warehouse to find the solution was right under his proverbial nose the whole time. Sometimes invention is the mother of necessity. Other times desperation comes in handy too.

Speaking of invention as the mother of necessity, changing one’s environment, especially when you have a disability, is always challenging. I found myself keenly attuned to accepting these challenges in order to accomplish my daily tasks. Over the past several months I have become a little bit of a germaphobe. My brother, Michael, even gave me one of those first aid kit things with masks, gloves, hand sanitizer, and assorted other germ prevention stuff as a gag gift for Christmas! I would have settled for him washing his hands. ;) You can imagine, then, that I was relentless in this hotel about keeping clean. Doing my best to ward off all of the previous guests’ germs, I found inventive ways to hold my toothbrush and toothpaste with my one good hand and the helping right hand so as not to accidentally drop my toothbrush in the sink by resting it on the unfamiliar and less stable counter/sink combo. I paid especially careful attention to the order in which I did things like taking medication and vitamins so that I wasn’t touching tables or anything else before touching pills and placing them in my mouth. Probably more impressive than my idiosyncratic germ prevention methods – which are somewhat commonplace at home anyway – was my bending a tiny bit to the inevitability of germs. It may have been nearly imperceptible to an outsider, but I was proud of myself.

The second big errand was to a new dressmaker for my maid of honor dress. Recall my previous encounter when attempting to get a dress made. I spoke with a lady at this shop a few weeks ago and she seemed confident they could make my three pieces and was very nice and professional on the phone. She even possessed the lovely Southern charm that makes public and private life in this part of the world more pleasant and, I believe, is often lacking in our general ways of life. When I pulled into the parking lot, I realized her shop was in the basement of her home. So Southern! She was sweet, but more than any of that, she was professional. She assured me she could do what I needed, we decided on a jacket, she took my measurements, and gave me the information on how much material to purchase and the price of the pieces. Bing, bang, boom. Not one intrusive question and no comments on how small or thin I am, which is nearly a miracle. Giant sigh of relief.  Her only (potential) faux pas was when she told me, in order to reassure me, that when I walk out of her shop, the dress will be customized to fit me.  I let that go because I have said it myself over the years.  We say it with folks who are visually impaired: “Nice to see you.”

I also spent some time reading. In 2002 I read Riding the Bus with My Sister by Rachel Simon, a memoir of the year Simon spent riding city buses with her sister, Beth, who has an intellectual disability. Loved it and the movie on which it was based starring Rosie O’Donnell and Andie MacDowell. Simon has a newer book/memoir out, Building a Home with My Husband, and it arrived just before I left for the hotel on Monday. Superb book and beautiful writing. Check them out.

Now I’m home again and it’s a day of thunderstorms here in metro Atlanta. Ms. Jenny, my golden retriever, thinks I can protect her from the thunder. I’ll try!

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